Now what?

[mle_ii]

Here's something else of interest with regards to Xifaxan (Rifaximin/Rifamycin). It is most helpful in getting rid of mycobacteria. You may remember this as MAP or M. avium paratuberculosis, this is the particular bug that has been implicated in the past as being part of Crohn's Disease.

http://en.wikipedia.org/wiki/Rifamycin
http://en.wikipedia.org/wiki/Xifaxan

To even further blow the mind guess where Rifamycin was first found... it is synthesized by a bacteria called Amycolatopsis mediterranei. Though I would guess that it is probably artifcially made by man for use in drugs.

So here again we can see the power of bacteria or gut flora, and who's to say, perhaps the bacteria that we might be low on, or bacteria that we have too much of or bacteria we are missing might play a similar role in producing antibiotics that protect us from bad bacteria.

About the only problem I have with the first Dr who is having patients take antibiotics and probiotics at the same time is the potential for drug resistant superbugs and for even good ones to pass on the genetic codes to bad bacteria. The protocol of doing a flush of the GI tract, antibiotics second (though being careful of the choice and making sure to take the complete dose/perscription) and then finally sending in the good bacteria with something that has a lot of the good bacteria. And we're talking numbers in the 100's of billions on the ones or tens of billions, heavy on the bifidobacteria and some of the lactobacteria as well. Making sure that the bacteria used are the ones that normally populate the gut. Perhaps some Saccharomyces boulardii as well reading recent research.

Once the gut was repopulated perhaps a lower dose probiotic would keep the gut up to the levels needed for good health. Also keeping the sugars low and the good fibers at a comfortable level as well.

Mike

[tex]

Hmmmmmmmmmmm. Interesting, isn't it. Thanks for the links.

Tex

[Pat]

Well, my doctor was not so receptive to the Rifaximin. In fact she had to look it up. She is not a GI doc and I guess she thought that the Entocort would take care of things but since it didn't she sort of stammered around suggesting Cholestyramine and maybe Pepto Bismol. I chose the Pepto for now and will make an appointment with a GI doc. I've lived with this for this long and I am just not going to let this get to me. Thanks for being here and listening and supporting.
Pat

[mle_ii]

Hey, here's a positive for Rifaximin.

Effects of rifaximin administration on the intestinal microbiota in patients with ulcerative colitis.
http://www.ncbi.nlm.nih.gov/entrez/quer ... med_docsum

The effect of rifaximin on the intestinal bacterial population was studied in a clinical trial. Twelve patients with ulcerative colitis were administered rifaximin 1800 mg/day in 3 treatment periods of 10 days, each followed by 25 days of wash-out. Fecal samples were collected at the beginning and at the end of each treatment period to perform microbiological examinations. Titer variations of enterococci, coliforms, lactobacilli, bifidobacteria, Bacteroides spp., and Clostridium perfringens as well as their susceptibility to rifaximin during the different phases of the study were evaluated. The presence of Candida spp. was also monitored. After each wash-out period, concentrations of the intestinal microbial groups tested returned to initial values, showing that the administration of high doses of rifaximin does not significantly modify the colonic microbiota. Rifaximin-resistant isolates were also found, particularly in bacteria belonging to Bifidobacterium genus, included as probiotics in several fermented foods and in pharmaceutical preparations.

[mle_ii]

As well as another positive for what we're talking about.

Role of gut microflora and probiotic effects in the irritable bowel syndrome.
http://www.ncbi.nlm.nih.gov/entrez/quer ... med_docsum

BACKGROUND: Even though the cause of irritable bowel sindrome (IBS) is not yet known, alterations of the intestinal microflora may be important in its pathogenesis. AIM: To evaluate the efficacy of rifaximine alone or in association with the probiotic strain of Bifidobacterium longum W11 in reducing symptoms in patients with IBS. METHODS: We performed a monocentric, prospective, randomized open trial including 70 patients randomized in to two groups: Group A (41 patients) receiving rifaximin 200 (2 cp bid for ten days in a month) followed by a formulation of the probiotic strain of Bifidobacterium longum W11(one granulated suspension for 6 days on alternate weeks ) and Group B (29 patients) receiving only rifaximin 200 (2 cp bid for ten days in a month). The clinical evaluation was performed at admission and after 2-months, taking into account the method of visual analogous. RESULTS: At the 2-month follow-up, Group A patients reported a greater improvement of symptoms compared to patients in group B (p = 0.010) even if the physician's opinion at T1 did not confirm these results (p = 0.07). CONCLUSION: The increased colonisation by Bifi-dobacterium longum W11, after the cyclic administration of rifaximin, which eradicates the bacterial overgrowth of the small intestine, may reduce symptoms, especially those related to bowel habit and stool frequency in patients with IBS. The abnormalities observed in the colonic flora of IBS suggest, in fact, that a probiotic approach will ultimately be justified.

[tex]

Pat,

I'm not surprised that your doctor was not familiar with Rifaximin. It was only recently approved by the FDA, on May 25, 2004. I'll bet that a lot of GI docs are not familiar with it either, as far as using if for treatment of IBDs is concerned.

I would assume that most doctors view IBDs as autoimmune diseases, and therefore, they are likely to consider the suggestion of treating them with a selective antibiotic such as Rifaximin, together with a probiotic, as something that a quack would recommend. IOW, I doubt that most GI docs stay up with leading edge technology, at least, that's been our experience here.

Tex

[MaggieRedwings]

Hi Pat,

A lot of us here have not had results and I also was on Cholestyramine with no better results. I sure hope it does the trick for you.

Love, Maggie

[Polly]

Hi Good Buddies and fellow detectives!

I emailed Dr. Fine yesterday to see what he thought about the cleanout/antibiotic/probiotic regimen. He responded immediately, and pointed out that, of course, this regimen is what he recommends except for the antibiotic. He has designed an Epsom Salt cleanout procedure and has always urged the use of probiotics (and diet).

I found it interesting that one of his major goals was to develop a regimen that can be used by ANYONE with MC and therefore does not involve needing a prescription for any medication. Also, he is concerned that the VSL#3 probiotic is too expensive for most people, so thinks cheaper ones may be used. Interesting, don't you think? I suppose that over the years most of the people he has helped found him because they could not find a doc with a simple, effective approach...... so that he is very sensitive to this issue.

Love,

Polly

P.S. I'm going to write back and request his thoughts on antibiotics.

Love,

Polly

[Pat]

I have read here where some have said that you are so much better after a cleanout, like after a colonoscopy. I didn't have that experience after my colonoscopies. I wish something would work. I would do it.
Pat

[tex]

Polly,



Good work.

Love,
Tex

[Alice]

Oh Maggie,

I'm so sorry that you are going backwards. I don't have any helpful advice, except have you ever considered a trial of entocort just to get your general health and strength back? I know how you feel about drugs, just hate to see you get so depleted and feel awful everyday.

Love,
Alice

[mle_ii]

Here's one strike against the Rifaximin, it appears to have no effect on the Methane producing bacteria. So if this is one of the sources of dysbiosis then it won't work.

As far as the cost of VSL#3 I agree, it's expensive. Though if you do use another probiotic making sure that the count is in the 100's of billions is very important for the therapeutic effect. Why spend $50 on a hammer when a $10 hammer will work just fine. The thing is sometimes we need to use a $50 hammer every once in a while to get the job done and done right. :) And again I want to make sure that it's clear, I don't mean for someone to use VSL#3 forever, but for 1 or 2 months to get back on track I think it'd be money well spent. Then after that either cut the doseage down and only use part of a packet each day or purchase a different one. So for VSL if you were to cut it down to say 1/4 a package a day after a month or two on the full packet (or more) then the box at $80 per month is only going to be $20 per month for 4 months. And you're still getting a bit over 100 billion per serving.

Mike

[Polly]

Amen, Mike.

I agree with you totally. I don't think that any other probiotic comes close to 450 billion. I think I will try it as you mentioned - initially to give a huge boost. When you started it, did you go with 450 billion right away, or did you work up to it?

I would have to use the capsules, because the powder contains one of my intolerances (corn, if I remember correctly). You need to take 4 capsules a day to get the full 450 billion. So I am wondering if it might be best to try one capsule first and then add the others one at a time if tolerated.

You know, Flora Q claims to be dairy-free even though it contains lactobacillus. Maybe the VSL#3 manufacturer is just more compulsive about not guaranteeing casein-free?

Polly

[MaggieRedwings]

Thanks Alice. I just do not see myself going the drug way of kicking this disease in the butt. I am going to be persistent in the diet and detective work and this new regime that is being discussed in this thread seems like it may have potential. After all this teeth stuff is done then it is down to brass tacks and getting the better of all this - literally - crap.

Love, Maggie

[mle_ii]

Amen, Mike.

I agree with you totally. I don't think that any other probiotic comes close to 450 billion. I think I will try it as you mentioned - initially to give a huge boost. When you started it, did you go with 450 billion right away, or did you work up to it?

I would have to use the capsules, because the powder contains one of my intolerances (corn, if I remember correctly). You need to take 4 capsules a day to get the full 450 billion. So I am wondering if it might be best to try one capsule first and then add the others one at a time if tolerated.

You know, Flora Q claims to be dairy-free even though it contains lactobacillus. Maybe the VSL#3 manufacturer is just more compulsive about not guaranteeing casein-free?

Polly

I went for the gusto and took the full 450 billion. I figured if I had no problems at this dose then there's no way that I was reacting to the bacteria itself.

Yeah, indeed in the unflavored version it contains corn starch. My guess is that given the amount of bacteria that one would react to the corn starch, but then that's just a guess. I'd probably be a bit hesitent if it contained gluten, though given the research I doubt even that would effect a person. Luckily the capsule version costs about the same for the same does of the powder. I might just have to go to the capsule version as it'd be easier to transport and take once I'm taking the smaller amounts and not the total 450 billion at a time.

The problem with taking a smaller dose is that perhaps in the smaller amounts your body may react differently than it would to the larger amounts. And perhaps the smaller amount would be a more negative reaction. Say for instance due to the cross talk between the bacteria that less anti-inflamitory or less imune prohibitive chemecals are produced, then you might react to the lower does and not to the higher. I could probably come up with pros and cons for both intakes, but you'll never really know for sure until you try.

Oh and I think that there was another source of a probiotic with around the same numbers at a cheaper cost. The only hesitation for me would be that VSL is the one studied so I know I can trust this source. That and the bacterial content is different.

Yeah, I'm not sure how FloraQ is dairy free with the lactobacilis, but apparently it is according to their information.

Oh and FWIW, I'm still gassy, but I sure seem to be getting a lot better. I went from 1 normal BM to 2 normal BMs a day recently and feel like I have a lot more energy. If could make the gas be less then I'd be feeling 100% for sure.

Mike